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Wednesday, January 25, 2012

Love, Fear, Courage and Faith - What Cancer Does to a Family

I never intended this to become a cancer blog, any more than I intended it to become a recovery blog when I first started it to be a jewelry blog four years ago.

It won't always be a cancer blog, but cancer - like active alcoholism - is a totally absorbing, all consuming thing. Everything in my world - literally everything - revolves around having cancer. The kids' schedules, my husband's schedule, my schedule - nothing can be set in stone until my treatment logistics are pinned down.

And that's just the practical part of having cancer.

The emotional part is the real all consuming thing - for all of us. The kids having to make adjustments to my weakened state, learning to be more self-sufficient, being brave about new sitters and going on play dates at school friends' houses they have never been to before. Getting rides from Mommy friends of mine that they know, but haven't driven with before. Any one of these things would have been a big deal Before Cancer. After Cancer they are learning to adjust on the fly, because they don't really have a choice. I am so proud of both of them, bravely extending their horizons, stepping almost daily outside of their comfort zones, managing their fear of my illness along with all these new things.

My husband is working so hard - both at his job and here at home - he is parenting the kids most of the time, and being a care-taker for me, all while managing the regular day-to-day business of full time job. He amazes me every day at the patience he shows the kids, even when I know he is stretched to his limits. He asks me over and over, what do you need? What can I get you? He is a strong shoulder for me to cry on when I need to, even as he tucks his own worries away he strokes my back and tells me everything will be okay. He looks out for ways to make my life easier - a laptop table next to my bed, cleaning out cabinets to make things more accessible, finding just the right thing to cheer me up.

Cancer impacts the whole family, on every level.

I struggle to come up with things to write about that aren't cancer related -- but those thing don't exist in my world at the moment. My thoughts are consumed with managing symptoms, pain, sleep, medications and trying to keep fear at a healthy arms' length away.

I have been stripped down, emotionally, to an almost child-like state.

I think back to where I was a year ago - preparing to fly to the Blissdom Conference in Nashville, meet up with friends, speak on a panel, network and try to spread the word about Crying Out Now. I had recently met my weight loss goal of 65 lbs, and was generally feeling on top of the world.

These days there is no room for dreams, for ego, for thinking about building my business or networking. Those days will come again, I believe, but at the moment they feel long gone.

These days it is all about "what did you eat today, hon? Anything?" "How is the pain?" "When did you last take such-and-such medicine?"

And then my least favorite: "Have you, you know, gone today yet?" (like with children, bowel movements, or lack thereof, are a hot topic. Sorry if that is over sharing, but the doctors are concerned and I'm concerned, so the whole family is involved in finding foods that will help Momma GO.)

So maybe I'm more like a potty-training toddler.

My thoughts are so centered around me, not in an egotistical way at all, it's just there isn't room for anything else. I go into the kids' bedrooms at night to kiss their foreheads while they sleep and my heart aches; there is so much I don't know about their day-to-day life right now. Their worlds are held safely in the hands of my Mom, my friends, and sitters.

I'm still grappling with fear, too, although it is so much better than it was. Stripping my life down to its barest essentials meant that a lot of my former day-to-day fears were stripped away, too. They almost make me laugh, the things that I worried about Before Cancer. Things like not measuring up, trying to fit in, neuroses about why so-and-so seems upset with me, or so-and-so hasn't called in while. Those petty concerns about keeping up with the other Moms, being successful in business and raising kids - doing it all, and doing it all well - they seem very, very far away.

These days I live in a nearly constant state of deprivation.

I can't eat, I can't drive anymore, I can't talk easily on the phone (or at all, because of the pain), I don't have the energy to do much of anything. Deprivation does funny things to your mind. First it drove me nearly insane, as I struggled against it. I fantasized about my old life: about exercising, about biting into a cheeseburger, about going to the grocery store and piling food into my cart, about meeting up with friends for breakfast, or a night out.

Slowly, slowly, I am adjusting to my new normal, and now I don't think much about those things anymore. There isn't any point; it only brings misery. I have tucked myself into my little nest of a world, and I'm waiting it out. I know there are things - important life lessons - I will learn through this experience, especially coming on the heels of another tough life change: losing my Dad so suddenly in June. I had barely begun to process his death when the cancer came along. I've decided to put all the Major Life Lessons on a shelf, though, for a while. I don't have to figure this all out now. I just have to put one foot in front of the other, keep my heart and mind as open as I can, and get from one end of the day to the other.

And then I have to get up and do it again the next day. But I'll think about that tomorrow.

And, of course, my "what if I get cancer someday" obsession -- a fear I carried with me my whole life like a nasty, heavy piece of baggage -- now that it's part of my daily world, it isn't nearly as scary as I imagined as I cultivated my fear-fueled obsession with disease. Because we adapt, we do, in astonishing ways.

There is an issue with the lump on my neck; the one that holds the tumor inside. Last week it got bigger, and then a LOT bigger, and the doctors and nurses tried to downplay it, but I speak fluent non-verbal communication among doctors and nurses now and I knew they were concerned. There was talk of doing a CT Scan to see what is up, but that wouldn't change the treatment protocol at all, so it was decided to stay the course. And the lump is getting smaller again, slowly. Hopefully it will continue in this direction. The doctor yesterday basically (again, in doctor-speak) prepared me for the idea that I will very likely need surgery to remove the lump after chemo and radiation are done.

"And if we find there are active cancer cells in the lump after we remove it?" I asked. I am not afraid of answers anymore. I do not stick my head in the sand. I want to know. Sometimes I don't even recognize myself when I hear myself speak to doctors

"Well, then we celebrate that we took it out and didn't wait to see if it would shrink," was his guarded reply.

I decided not to press it, because I know he doesn't have a crystal ball, he doesn't know why tumors behave the way they do. He did tell me he had one other case like this, where the tumor just wouldn't shrink, but when they removed it after treatment was done it was just "rubble" - no cancer.

Steve heard "rubble"; I heard "only one other case." So the fear thing is a work in progress, but I've come a long way.

Tomorrow (thankfully) the feeding tube goes in - I don't know if it will be overnight procedure or not, but they will have to put me under general anesthesia to place it in. My throat is too far gone for me to be awake, even under conscious sedation.

I am hoping the feeding tube helps me get some strength back - I'm lucky if I get 800 calories (all liquids like Ensure or Carnation Instant Breakfast) into me during the day. I should be having, in my compromised state, closer to 1800 calories. So I hope the tube helps with the healing and the energy.

The kids are calling it my "belly button straw", which makes me laugh even as I dread having one at all.

This print can be found in the Etsy shop RococcoLA
I wasn't paid or compensated in any way to promote it. I just love it.

Thank you for being here, reading. Your comments and support help me SO MUCH. Being able to write through this has been healing for me. As hard as they are, I want to remember these cancer days, too, because there are so many moments of breathless beauty and bravery, and I want to capture those, along with the pain and the fear.

Oh dear Ellie. You are wonderful. Amazing. You know, this post could have been "What cancer can do for a family" because without your amazing spirit and open heart - this illness could pull a family to pieces. I hope all goes well with the feeding tube - you are in my thoughts and prayers. Lots of love.

Love your words about letting others carry you when you cannot carry yourself. The very act of letting others carry you shows so much strength and faith. You are learning a lesson that I fear I could not learn ... I always think that I should be in control; that I should do everything; that I can make everything right. And I need to learn that it does take a village. Keeping you in my prayers.Lee Ann

Hi there Ellie.....through it all I am so grateful you continue to write about your life. I cannot say this enough - your writing makes me feel so much less lonely out here and even with the cancer I will never tired of reading what you have to say.

There's no denying it - this is a grueling, brutal time for you and you are doing what you can and that is driving right through the situation with hope and faith.

I don't know if you ever found out but their is a great blender called a Vitamix. We own one and it's fantastic. You will qualify for one at a significant discount. The Vitamix blends up WHOLE foods into a juice. That means the entire orange, kale, blueberries etc. So check them out.

In the meantime, I will keep praying for you and your family. I don't have a crystal ball either but I really believe you are going to knock this Cancer off it's ass!!!!!!!!!! Nobody puts Ellie in a Corner! Not denial, not fear, not addiction and definitely not CANCER!!!!

Hi Ellie. I know I don't know you personally, but your blog has touched me very much as I've gone through my own sobriety. I think about you when I don't see you on my reader, and I'm sending you good thoughts and hugs. You've amazed me with your strength in your sobriety and now with this as well. You're just awesome. : ) <3

Hi Ellie, just thinking about you and including you in morning prayers. While I know all too well how difficult it is, I can also see that you are doing well and I believe your attitude will continue to carry you through.

The time left is getting shorter, and then you can think about gaining weight instead of losing it :). What a change, huh?

I stumbled across your blog the other day, and wanted to thank you for sharing what's going on in your life right now. I can relate so much to the part where you wrote about your friends and family carrying you when you don't always feel like carrying yourself. I am a 32 year old mother of two little boys ages 4 and 1, and was diagnosed with stage 3 breast cancer on November 18-the same day I think you received your diagnosis. I had a mastectomy on Nov 30th, and had my first chemo treatment yesterday. Times are tough, and I appreciate you sharing your story. Everyone's stories are different, but once you are touched by cancer, there's no going back, and we are all connected in some way, almost like a club you never really thought you'd be a part of. Hope the feeding tube insertion goes well. Thinking of you and sending hugs!

hey, ellie...you know what cancer does to a family...you have mentioned it already several times. the notes from your kids in your prayer box...:) your family loves and appreciates and adores you more than they ever knew...and when this is over you all will be closer and more loving in a way none of you dreamed. cancer has made life REAL...the day to day, harried silliness, taking for granted...gone. you and your family will be more loving and appreciative and able to live in the moment. your kids are learning to love with strength and ferocity most people never experience. this too shall pass, and when it does you will be an even more awesome family!! LOVE and PRAYERS from Charleston!!~valary

Cancer is an AMAZING process for so many reasons. I felt like it showed me how far reaching love, support and prayer can be. I remember writing on of my Facebook updates during my treatment "it absolutely amazes me that people I have never met and likely never will find it in their hearts to whisper my name to GOD and ask him to heal me". It still makes tears stream down my face. I am a Lucky Girl!! I also can relate to your experiences with your children. I remember having a conversation with my youngest asking about what other family members were doing. My mother kept my house cleaned for me, so he said that Mimi cleans, I asked what does daddy do? "He cooks". I asked what does mommy do? "You take naps". Ahh the honesty of children. xoxo. Hang in there.

I have been reading your blog for awhile now, never commented though :) Guess that is "stalking", right! I stumbled upon the blog looking for support for the women I work with (pregnancy/addiction/recovery/depression) and fell in love with your words. I am supporting you from a far and sending you strength. You are a brave, amazing woman. Keep fighting-I will be here reading and cheering.

You have such a supportive loving family - that is so awesome. I pray you sail through the feeding tube procedure with no discomfort. Today it's rightfully all about the challenges of taking care of yourself. There is no other way to get through this. You are doing great. You continue to be so attuned and sensitive - it just amazes me. Somehow your perceptive and articulate clarity actually helps me get closure on what I went through two years ago. You are going through this with the attitude I had hoped for (but couldn't quite maintain.) Thank you again for sharing your journey - you inspire so many. Keep the calories and water flowing in - at least try to get close to 1800 (I rarely, if ever, met that goal- some days I didn't even get close - just do the best you can - every little bit helps keep your strength and healing going :) Ellie - I pray for you daily.

You were one of the first blogs I discovered after realizing I had to stop drinking. It was a hard, uphill battle that I couldn't have fought without inspirational angels like you and just like in the early days of sobriety I check in with you every day to see what wisdom you will share. I have 2 girls age 17 and 14 and I signed them both up for Gardasil shots because of what I learned on this site. I am so proud of you for choosing to see this experience as a reason to be grateful. You are in my prayers and on my mind every day. Get well. You are amazing!

I'm new to your blog, stumbled upon after arranging a playdate with the daughter of one of your 'commandos'.I don't think you realize just how many mothers are praying for you and your family. It is a sisterhood, to be sure, and we all offer our fierce mother-strength, and wish we could ease your burden in some way. "But for the Grace of God ..." it could be any one of us fighting the battle you face now.

I believe there isn't a person on this planet stronger than a mother. And I believe there is no force greater than prayer. So, with this in mind, I hope you find a morsel of comfort knowing that mothers everywhere are praying for you.

wow! what an amazing blog post. You are all stepping outside of your comfort zones! I can see it is not easy, but together you are helping each other! God Bless and I am wishing you well on your procedure. Dawn

Sending you tons of love, Ellie. This is the first time I've read your blog and I will be reading more. I have a basket that I call a Basket of Blessing for people that are ill and would love to send one to you, if you'd like.

I'm new here and so in awe of your bravery. Losing your dad AND getting cancer in the same year? Holy moly. I am so sorry. You've reminded me to see the beauty in the mundane mommy things, like pushing a full grocery cart. I'm sure you've already taught so many readers to see the good in each day. Thank you for that. I wish you WELL.

Oh Ellie. My husband walked by while I was reading this post right now and could tell I was engrossed. I told him what I was reading and he asked how you were. I told him you were so brave and so honest and so authentic as you travel this path. Every time I read one of your posts, it helps to chip a little fear away for me too. Thank you for so self-lessly giving. My heart opens and I learn so much from reading of your revelations, your fears, and your hope. You are my hero. xoxo

I wrote a whole comment on how I manage my constipation and it disappeared! I tried to send it via AIM & it bombed out. Or maybe you'll get it twice?? So it was something like this:I take 2 stool softeners every morning and 2 every night to keep things moving. It's the plain kind, not the kind with laxative so it's okay. It's OTC & cheap and really works. You can get it in liquid form too for your tube if ask the pharmacist. Please try it. It took a long time for me to figure out how to manage it and constipation is miserable even when you're healthy. Best wishes; you are in my prayers. Camla

Ellie, I found you through Heather of the EO and I am now reading all of your words. You have a beautiful way with words, you do know that, right? My heart lifts you up in prayer, patience, grace and strength. May you know how very much you are cared for.

It is pretty amazing that in the midst of this you are still able to post here ... and with as much finesse and clarity as ever.

Sometimes I know that I don't even hear/know my own story until I've said it out loud or written it out. It is almost like hearing someone else say what I've said! Weird, but true. So we need to tell our stories, I think, for our own sake as well as for others. We tell our stories so that we can get better at telling/creating the grand story that is our lives, to make of our lives a story that touches others and is worthy to pass on to our children. What a fine, fine job you are doing!

You've done so, so much to help others tell their story, Ellie. So many lives turned around. Who can say how big and far-reaching the impact of what you've done will be?

We'd certainly understand if you took a break from blogging now ... but we're grateful that you haven't yet. Hang in there ... and carry on! You're one brave trooper, and your courage will make all the difference.

Being able to write through this. I get that. I write too, though not as eloquently as you.

If you have time and any energy left over, I'd be honored if you would stop by my blog, I think it's on my Open ID (Google) which may be in my "follower profile". If not, just google "Get Unwrapped!"

I'm so glad you've been able to write through this, and through so much more than this. Writing - for writers - touches an area in us that nothing else can. It helps us process difficult feelings, helps us remember what things were like at the time, and helps us heal. And sometimes - our writings help one other heal. Like yours does with me.

I mean this: You are inspiring, and strong, and honest. I'm very honored to know you, even a little, and I think of you often. And your journey and how you share it with us and how I want this to be over so soon for you and for it all to be OK. And it will.

Okay I know we have met at a conference. Your face looks so familiar. I came here via Heather at Extraordinary Ordinary. I was diagnosed shortly after 2010 Type A Conference with Thyroid Cancer. I've had the removal of my whole thyroid and my first and hopefully last treatment. I have to be checked and a small treatment done once a year for the rest of my life. The scare will never go away. I am so thankful to read someone that puts it out there. I've had trouble saying it in words. I was shaking my head in agreement the whole way through this. Your fight is more involved than mine but once the word cancer is there, your life and outlook on life totally changes. Thanks so much for sharing. I'm subscribing now! Many prayers for you and your family!

Hi Ellie, I just saw the video your friends made you. How wonderful is that? Friends and strangers alike, you are in our daily thoughts. We care so much. I hope this painful time passes quickly and that before you know it, you will be up and about participating in all the fun you and your friends create. You are such a good, good person. I hope you know how many people you have touched as you go thru your journey. Love, Joanne

I just wanted to send you love & healing thoughts. I am 10 years past cancer and I want you to keep in mind that there is & will be an after cancer for you, too. This will be a memory one day. I am deeply moved by your strong will & courage. Let this carry you through. XO

Dear Ellie, I'm so sorry I haven't posted in a long, long time. After all the hope and help you and your blog gave me in getting sober, it was really hard for me to deal with your diagnosis. Then I got over myself so here I am to show you the love and support you gave me! I've been thinking about you and your family, and praying for you all as well. My 18 month (a whole year and a half!!!) sobriety date is coming up and I know I wouldn't be here if it wasn't for you. You are such a strong woman, keep your head up, and just keep swimming!

PS I would love to send you something thru the mail, what address would I send it to?

Ellie, my love, your strength and resilience shine thru your words like lasers. Know you are being help up to the Universal Healing Power every single day. You are going to be all right--the doc said so at the beginning and I believe his knowledge, family support and your fortitude will bring you out the other side intact. We're waiting to help any way we can. (Hugs)

I started reading your blog in early October after an unpleasant night out with my husband and friends. I drank too much, took a cab home early and woke up to find him on the couch not very happy with my behavior AGAIN. I stopped reading for awhile and just checked back and am stunned by your cancer diagnosis. I don't know how you manage to write your thoughts so beautifully for all of us to read. You made me truly realize how lucky I am to live with the day-to-day doldrums of raising two little people and being a stay-at-home mom. I will NEVER again regret the time that I spend with them -- no matter how mundane. Sending many prayers and thoughts your way for a full recovery!

Ellie, I was just talking to My Girl A about that "new normal" - that the world just was 'cancer' for a while, and that's OK. One day, your normal will shift again and I can't wait for that day for you. Been thinking of you, and will say a prayer tomorrow. And sending a High Five to those kids of yours, being so incredible.

I'm just discovering these posts - but not your blog. And I don't have any idea how I missed them, but maybe I was meant to find them now. My husband was diagnosed with thyroid cancer on Tuesday and it has rocked our world - as you know all too well. Thanks for these posts, so very much.